Sunset Ocean Beach Sky Evening

Living with a Rare Condition

This past week, I went to the doctors and found out that I’m allergic to shellfish. The reason that an allergy test was conducted for me is because I’d been having a lot of stomach problems lately, including a trip to the emergency room in January because of it. But I’ve been having stomach aches, weight loss and other on and off problems like this since I was little. When I was 15, I was formally diagnosed with ulcerative colitis, a not so common digestive/stomach problem. I tried multiple things and many doctors, but it never truly went away. It wasn’t until this week, that they finally even attempted to find out what could be a big factor in contributing to my ulcerative colitis.    

If you know me, or if you’ve been following my blog for awhile, you will know that I also suffer from a rare condition called Vulvodynia. For those who don’t know, or for a refresher, Vulvodynia is when one has an abnormally tight vaginal area, and can make inserting anything in there painful.  It makes it very difficult, and sometimes impossible for someone with this condition to have sex, get pap smears or even do something as simple as put a tampon in. Again, it’s rare, and doctors don’t have a lot of research or answers for it. 

What do both my stomach problem and Vulvodynia have in common? They’re both rare medical disorders, and I have to live with them. They’re obviously not life threatening like cancer or something more severe, but they contribute to my quality of life. I’m not going to sugarcoat it, they both suck. Having a rare medical condition means that not a lot of research is done on your issue, and I think that’s something that’s very frustrating. You want answers. You want solutions. But you almost never get them. It feels like doctors just give up on you, and that really sucks. Even though sometimes it isn’t their fault, it often feels like I am not treated like a priority just because they “can’t do anything right now” or it’s “complicated and really difficult to treat.”

Having a rare condition also means you feel really alone sometimes because not many people understand what you’re going through; it really makes you feel like you don’t have anybody to talk to about it. Then there will also be the people that think you’re imagining things. “It’s just stress,” they’ll say, even though you’ve been suffering for years and you know for a fact it’s definitely not that. 

This may not be the most uplifting article in the middle of all that we’re going through, but I just felt it had to be said for the people that go through something similar. Though you may feel alone, you never truly are. You will get through it somehow.